This blog is about our 5 year old little boy Seth and his battle with Severe Combined Immune Deficiency (SCID). At the point of beginning this blog he is being considered for a second bone marrow transplant in order to save his life. My aim is to provide a real account of his history and progress through diary entries, pictures and videos showing that the boy makes the most of his bubble!. I, his mother, will be the main contributor to this page, but its not about me. Comment, ask questions, do whatever you please this is not my page but ours. I hope that this provides others with information on tackling a condition that 30 years ago would have lead to death. As well as giving family and friends a place to keep up to date with the news of his journey. #wearyellowforseth

Who is this Seth anyway?!

Being born and living with a life limiting illness (that leads your mum to write about it on the Internet) means that loads of people know your face, your diagnosis and other bits, but don’t really know you… So I though it would be nice for you readers to get to know our lad, who is more than a bubble boy. Actually I’m pretty sure Seth doesn’t consider himself to be ill. He just thinks we’re all a bit mental!

He may be stuck in a room with no where to go….but this boy still has things to do!

Seth has always been a stickler for the rules..(those of you who know me will realise how proud that makes me!!). Seth believes everything has its place and his playroom at home is managed through “one toy in…one toy out”. He often shakes his head with a tut and a sigh when other children have been in and (naturally) trashed the place.

This acceptance of rules is the bane of his fathers life at times as he is often told “not like that daddy” and daddy is often on the receiving end of a disapproving grunt and stare if something hasn’t been done as it should. Even his daily injection (which he hates) if it isn’t done on time daddy gets a good telling off!!

Hi! We’ve just found out our son has gamma chain scid and I have been past on your page by a friend! Was just confused reading this that seths dad is going to be his doner? As we weren’t even aloud to be tested as they told us we can’t be a match? If you have any answers please get back to me thanks

Hi Tayla. Seths dad was the donor this time. We were lucky enough to have a none related 100% match last time. However that transplant failed.

This time to reduce the risk of graft versus host disease our consultant recommended a T Cell Depleted transplant. This transplant is one where the donor cells are specially treated so that a parent – who will only ever be a 50% match can successfully be a donor.

Oh I see now I read this and was so confused, how is little Seth doing now? Bless his little heart what a gorgeous happy little boy throughout everything he’s been through! How are you through it all? We are now waiting our appointment with the bmt team and our daughter is going to be the donner! Do you mind me asking if you know why his first transplant failed? I think I read your consultant was dr Quasim we have seen him the last two times but dr Austen worth before. It’s amazing what you’ve done here on your blog and getting the wear yellow for Seth so big, I hope you don’t mind me messaging I was just passed on your blog by a friend when I explained what was happening with our son and said about your family and Seth going through the same x

He’s doing really well. Can’t believe the difference in him really. The first transplant we had was without chemotherapy because Seth was so ill. It meant that he got gvhd quickly and we spent the next 4 years really trying to control that. Eventually the gvhd went to his bone marrow and attached that leaving him with less than we started with.

Oh good I’m really pleased to hear he’s doing well now! I did read a little bit on here about him getting gvhd, 4 years 😦 bless all of you what a journey you’ve been on that’s such a long time what a relief things are going well for you all now! Do you mind me asking if you were in hospital long through the transplant as I did read about 5 months but I wasn’t sure if that was because of your little man getting ill with it ? My community nurse said to me 3-4 months but I didn’t think it would be anywhere near this length of time? Thanks for talking I appreciate it!

3-4 months is a reasonable assumption. No complications it could be 3 months but I would expect more. This time we were in hospital from January until July. But he had complications so did not have his transplant until he was well enough on 1st may. In Newcastle rather than keep you on the ward longer they have a halfway house for you to stay in that’s walking distance from the hospital. They don’t have this resource at GOSH so you tend to be an inpatient longer. For his transplant at GOSH he had it 4th November and we came home end of January.

Really ?! Bless you that’s such a long time to be away from home! I’ve been so nieve I wasn’t even expecting to be in a week, it’s worrying because my partner will have to be at work and we live 3 an half -4 hours away from GOSH so my little girl is my worry as she can’t stay with me all that time. I need to speak to GOSH I keep asking questions but they don’t want to overload me with information and worry but for me i would rather know the ins and outs than sit here contsantly thinking what about this and what about that!

I was the same. I like the information so I can make plans and deal with what’s to come. We live about 3 hours from GOSH, so my husband was only able to visit at weekends. But thankfully we only had Seth then. We were really grateful that this time at Newcastle we were all able to stay up there together. They will support you as best they can though. Ask to speak to the hospital social worker. She will be able to guide you through all the none medical side of things.

Yeh I emailed our nurse the other week to ask for a plan as I just felt so lost with what was going on we kept getting told we need to test this and this but then it was like weeks later and still it wasn’t happening and I just felt like I needed dates on things so I knew where we were! But I understand with Tommy he’s not as ill as what they normally see in scid babies so there saying it’s more complicated as with gamma chain scid which there saying was passed down from me they usually have no cells but Tommy has a very small amount so there having to run more tests before the transplant as it makes things more complicated for it! Aw did you! Because you have another little boy now don’t you :), so they put you all in accomidation up there? That’s really good! Oh I didn’t know there was one I definetly will thanks for telling me that.

Ah that is more complicated if he has cells- Seth was completely flat. Hopefully they can get back to you soon with a plan. But also I think sometimes things can change- for example if an emergency comes in or a child has to stay in longer. We haven’t had that as both times Seths been so I’ll his transplant has been an emergency. But I have a friend who had theirs rescheduled because an emergency came in. Frustrating. But nice to not be the emergency I guess!!!

Aww bless him, I’m glad he’s doing well now I bet that’s a relief after all these years going through it! Yeh I’m lucky he’s not an emergency and course they have to concentrate on the Ill ones first I completely understand that I just have the fear of him getting ill in the meantime but we’re back there Wednesday but they’ve called today to say they may have to change to Tuesday as the junior Drs are on strike Wednesday!! Were all going this week for my little girls and Tommys bloods to be taken, also they’ve had three more cases since Tommy and Tommy was the first in three years with his type of scid which is shocking as he was only diagnosed in January and it’s usually so rare isn’t it, but these poor babies aren’t well like Tommy atall it’s so sad for these other family’s too just horrible to hear there’s even more now going through, I did also read about Seths thymus ? they done an ultrasound on Tommy last week and couldn’t see his have you had anymore results on Seths or know what that actually means I think I read about them transplanting this on Seth too? Dno if I read that correctly?

Seths thymus is now working. We’ve now got fully educated T cells which proves it. Not sure how much you know but the bone marrow produces the cells for the immune system. But the T cells that it produces are uneducated so cannot fight infection. They leave he bone marrow and then go to the thymus where they are educated.

I don’t know if it would help. But I have a Facebook page with a lot of parents of children who have been through or are going through transplant for SCID. There may be someone who has more recently gone through transplant at GOSH, or who has a child with the same type of SCID as Tommy? They may be more knowledgable than me?

It’s on Facebook called wearyellowforseth. If you follow the page I am happy to post a question to followers?

Oh that’s good to hear Seths is now working! And I see no I’m not very clued up in any of this yet so when they said they couldn’t see it I wondered what that actually meant for him so thanks for that! And I’m not on Facebook unfortunately! I really appreciate the offer though Thankyou. By all means if anyone contacts you about anything the same or you think it may relate to me or help me or them don’t hesitate to pass on my email I’ll help anyone I can and be open to anyone’s information or advice

Just heard about your story from a friend. Really feel for you guys as do my parents as I am a 22 year SCIDS survivor. I had a transplant in ’93 at University of Wisconsin (US) and had a boost in 2005 at Cincinnati Children’s (my Dad who is ironically named Nick was the donor both times). I feel really bad I missed yellow day. Anyway, wishing you guys all the best and you are in our thoughts.

Hi, amazing to hear your a scid survivor! My son has just been diagnosed in January! Amazingly a year after birth and a year of my fighting to prove mothers instinct of knowing something wasn’t right he is now awaiting a bone marrow transplant! But I’m left very confused hearing your dad was the doner as we as parents our first instinct was please test us and we were told we could not possibly be the doners :s! If you have any information it would be great if you could get back to me ? Thanks

Hi. Yes Seths dad was the donor this time. He had a T Cell depleted transplant which has been successful. The parents bone marrow cells are separated so that only one type of cell is given that the body doesn’t reject. I did a blog on it on this page. Would have been before 1st may 2015. Although if you have any further questions don’t hesitate to ask.

Seth,
Happy Birthday….. I am a Paramedic and Chief of a department in New Madison, Ohio USA and I suffer from CVID Common Variable immunity Disorder so I have a little understanding of what you struggle with every day. I and my staff would love to send you a package for your birthday with items from our department> Could we please get a mailing address so we can send you a box of goodies from our department.
Fight the good fight Seth stay strong and I will keep you in my prayers and thoughts.
Eric Burns, Paramedic and Chief of Tri-Village rescue Services

Hi. Thank you very much for your message. If you would like to send Seth something you can send to Seth Lane, ward 3, Great North childrens hospital, royal Victoria infirmary, Newcastle upon Tyne, England, ne1 4lp. Thank you

Hello, Seth and family. Hope everything’s alright. I forgot to wear yellow the other day, but today I’m wearing yellow and all my prays and good vibes are for you, little warrior. I’m Ivy from Brazil and I love to see you smile. Be cool. Kisses

M’am,
Reading about your son’s condition really hits home to me. I have three kids, separated from them at the moment. I would love to help you out in any way possible. Just reading his story has made him my hero. Please know I’m praying for you all and I am really hoping things start turning around. You really have a beautiful family. God Bless.